Norwegian ‘Woulds’ (and ‘Wouldn’ts’): The ME/CFS Survey

We rarely get country-wide surveys and it’s definitely worthwhile taking a look at one when they occur. Norway, of course, is an interesting place these days with strong advocacy efforts getting significant media attention and pushing the Norwegian government to fund the Fluge/Mella Rituximab trials. Norway, as a country, appears to be a bit more of Chronic Fatigue Syndrome than other countries- but is that awareness showing up in improved health?

1100 people answered the survey

Awareness may be higher than other countries but support is still very limited with just one (controversial) young person care facility and one hospital with a clinic for adults with ME/CFS.

The Norwegian ME Association collected responses from 1100 of the approximately 10-20,000 people believed to have Chronic Fatigue Syndrome (ME/CFS) in Norway.

Let’s see what the (abridged) English version of the survey says is happening in Norway.

Survey

Economically, ME/CFS patients in Norway are, like ME/CFS patients everywhere – they’re hurting and in need of assistance. More than half have received ‘temporary rehabilitation” benefits and a quarter have received 100% disability. That’s a enormously high percentage of disability in disease in a younger population.

(These high rates of disability will have large economic effects. A recent study compared the economic effects of severe disorders as stroke, spinal cord injury, traumatic brain injury, multiple sclerosis and limb loss and muscoskeletal disorders (arthritis/back pain). It was the muscoskeletal conditions (as well as traumatic brain injury), not stroke or multiple sclerosis, that had the most impacts on the health care system in the United States. This is because these diseases, like Fibromyalgia and to some extent ME/CFS, are relatively common, don’t respond to treatment well, and/or often strike the young.)’

Two-thirds of those surveyed did NOT feel that high levels of stress contributed to their getting ME/CFS

Despite the high costs posed to society, diagnosis rates of ME/CFS are low in Norway with about half those surveyed taking three or more years to diagnosed and twenty percent taking over ten years. (This is for a disorder that does not require specialized tests to get diagnosed – just physician knowledge.)

The fact that 75% of patients assumed a viral or bacterial agent was involved speaks to the flu-like symptoms, prevalent in this disorder and the high rate of infectious onset.

A third of the survey recipients associated prolonged stress with their onset of ME/CFS which meant that two-thirds did not feel they were under undue stress when their illness began. Stress, it’s clear, cannot explain the onset of most ME/CFS patients in Norway.

The fact that “significant exercise-induced energy failure, as a result of physical or mental strain” was the most problematic symptom in this large group,validates the Canadian Consensus Criteria and International Consensus Criteria’s conception of this disorder. It also suggests that as Fibromyalgia is the quintessential pain symdrome, ME/CFS is the surely the quintessential ‘exertion challenged” syndrome. In no other chronic disorder are patients probably as activity challenged as in ME/CFS.

Treatment

The table of medical treatments was not available, unfortunately, but the summary provided some interesting findings.

Meditative practices were one of the few approaches that were helpful and rarely caused harm

No breakthroughs in treatment are f0und in Norway, but basic approaches can be helpful. Pacing and relaxation techniques such as meditation and qigong improved or even greatly improved the health of about two-thirds of those who’d tried them, while only making 1/10 patients who tried them worse.

Seeing ME/CFS experts did make a difference

Specialist ME/CFS help makes a difference while hurting few as well.

About 2/3rds of the patients attending a clinic with ME/CFS experts improved while only 1/20 declined. The survey reported that 75% of Dr. De Meirleir’s patients surveyed have gotten better while only 1 out of 10 have gotten worse.

In contrast the Clinic For Children (run by Wyller?) received very poor results (1/10 better; 25% got worse)

Exercise therapy and the Lightning Process both bombed. Exercise helped only 1/10 patients while worsening or severely worsening 2/3rds of patients. The Lightning Process did improve the health of 20% of the patients trying it, but half reported they got worse and a quarter reported they got much worse. (The LP results in this survey were worse than in the UK survey of a couple of years ago). With the big Lightning Process adolescent study reportedly wrapped up several months ago it’ll be good to get some hard stats on its effectiveness. .

While two-third of ME/CFS patients reported they had ‘less good’ or even poor quality of life, a third reported they had a good quality of life.

This seems to confirm what most of us as patients know – that it is mainly physical exertion which makes us worse, and conserving physical exertion can allow us the ability to get through a very minimal version of everyday life, and somehow seems to preserve enough bodily energy to fight whatever this illness is. It is hard for society to understand an illness that is so paradoxical – beginning with a severe level of disability, but can get better (the opposite of the progressive illnesses we are more familiar with). The timescale of recovery is confusing – we think of having a sickness, such as flu, bronchitis, pneumonia, for a few days or weeks, during which we will stay in bed, and then we might begin to resume normal activities. When this acute stage goes on for months or even years, it still makes sense to treat ourselves as though we are sick, but of course we are told we must fight it, get up, take exercise – which inevitably makes us worse. It won’t surprise anyone that treatment by rest, meditation, healing practices that include relaxation, and encouragement to limit physical exertion is helpful for the majority. But the poor children – if children with any other disease were being given treatments (medicine) that made one quarter of patients worse, that treatment would be immediately withdrawn, in fact, made illegal to use. And the term ‘worse’ fails to describe the terrible state that patients with severe ME are in, nor for how long that can go on – years….Yet because we can’t believe that exercise can ever be a bad thing, it hasn’t been made illegal to impose exercise on children (and adults) who have ME.
We know that vitamins and certain other substances are needed for good health. But some people are allergic to some of those substances, and can’t tolerate them. Nuts are a good source of nutrition for most of us. But some people risk dying if they eat nuts, and society accepts that, we have warnings on food packets, food manufacturers have to keep to certain standards because of it. When exertion is recognised as similarly harmful for people who have ME, and we are warned about it, and doctors are warned about it – we might actually start seeing people recovering within a few weeks or months, as Ramsay reported. But tell me, are any big trials of rest as a treatment being planned? I don’t know of any.

Suella Postles
on July 4, 2014 at 9:41 pm

We are all different and we are all on different stages of a unique journey. Comparisons are invidious and thus so unhelpful.

For me,climbing back after a relapse, social and cognitive energies used are together as draining as too much physical exertion. pacing is the only safe way for me.

I learned, and am learning a great deal on how to control my symptoms from the classes and all the free short library articles at http://www.CFIDSSelfhelp.org.

Geoff Langhorne
on July 5, 2014 at 4:08 am

It took me years to realize that instead of feeling worse in Canada’s low-light winter causing a reduction in walking, that despite the low light and seasonal affect, it was the reduction in walking that caused me in winter to feel worse. The progression, however, from bed to walking at all, took a couple of years to effect, and would not have succeeded with some exercise-master driving me. My doctor recently was frank enough to share that he thought CBT and GET were the only effective CFS treatments – how far this orthodoxy-by-stealth has gone on! I had him de-roster me after he proposed lowering my B12, so I could also see other doctors in a search for one or more who have greater insight.

Tricia Watkins
on July 5, 2014 at 6:27 am

I would like to say, from my own experience, that fibromyalgia is equally a pain syndrome AND an exertion-challenged syndrome. I believe it is further along the disease spectrum than ME. Most people with ME who don’t recover seem to also develop FM. I would be bed-ridden myself if Ihadn’t moved to the country and taken huge amounts of pregnenolone.

Pam,
I have been taking Low Dose Naltrexone for 3 months but have not noticed any change.
Do you have experience with it?

thanks

Enya

Pam
on July 7, 2014 at 1:01 am

Hi Enya,
Yes, I am taking it and it is helping.
If you join the LDN Research Trust Facebook Group you can ask questions and see how other people manage their LDN – very helpful, I found out that I’ve been swallowing the wrong sort of magnesium for years!
Good luck,
Pam

I wish any of this applied to mu husband and me. We’ve tried all of this for the past 13 years. Just get worse every year. We’re barely alive now. Besides the horrible fatigue. Cant eat, cant sleep, cant evacuate my bowels. Don’t think we’ll be around much longer.

Jill
on July 8, 2014 at 3:59 am

Enya, I’ve been taking LDN for 5 years now. It is one of the few things that have helped. If it screws with your sleep in the first few weeks, its gonna help. I find it helped me most with that terrible hung over feeling in the mornings. There are not many mornings now that I can’t get up and that in not walking about like a bear with a site head . I buy nodict from river pharmacy and dilute as they suggest. Dr mc clain a fibro dr puts it in his top 3 meds and so would I. He has a cme talk on utube which I highly recommend. He also recommends plaquenil – which I’m currently trailing . He says he finds tizanidine his third best drug to help the pain abd put you to sleep. I will order this from river. I currently take clonazepam and gabapentin – both subsidised here in nz . Hope this helps

Ren
on July 8, 2014 at 1:26 am

“Norway, with its small resources…”

To my understanding, Norway – due to oil (but not discounting culture) – has become one of the world’s richest countries.